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Thursday, 30 October 2014

So, a legal first happened in Britain over the summer, the news of which is just coming out now, and it should have all of us concerned. Nancy Fitzmaurice, a 12-year-old disabled girl, was killed in a London hospital in August, and it was all legal. Her parents fought in court for the right to terminate her life, and the judge granted it.

This is the first time a British court has "allowed a child breathing on her own, not on life support and not diagnosed with any terminal illness, to be killed by the medical system." (ASAN Position Statement).

William Peace over at Bad Cripple has been blogging for a long time about the danger of something like this happening, as the struggle to make assisted suicide legal in Canada and the US has intensified. And I've come to agree with him. I do support the idea that people should be able to dictate the terms of their own death, but the legislation that would permit that needs very specific and stringent safeguards to protect disabled people from having other people dictate those terms.

Especially children. Not that we'll ever know ever know how Nancy Fitzmaurice felt about her situation one way of the other.

I realize that opponents will argue that we couldn't have known anyway. Nancy Fitzmaurice couldn't speak, or walk, eat, or drink, for that matter; she was born with hydrocephalus, meningitis and septicemia (Read more here). But that's the point, really. Nobody truly knew how she felt about dying, or whether she'd have tried to stop the process of death by dehydration at any point if she could have communicated that she wanted to. Everyone assumed that she'd rather die than live, and made killing her legal based on that assumption, and the ASAN Position Statement points out that media coverage hasn't included the voices of those with disabilities similar to Nancy Fitzmaurice's, to give a counterpoint to the narrative that she could never have any quality of life.

That's dangerous to me, and deeply ableist. No responsible judge would rule that assisted suicide is appropriate for a non-disabled child, even one in extreme pain, who didn't have a terminal disease. Even if a 12 year-old who was terminally ill made the request, I would like to think that doctors (and judges) would recognize that:

1) At 12 years old, most children aren't developmentally capable of appreciating all the consequences of that request and

2) Palliative care should be the alternative at that point, not assisted suicide.

If anyone knows of a situation where a non-disabled, terminally ill minor asked for the right to physician-assisted suicide (or the family asked on the minor's behalf) and received it, by all means let me know. Let's tackle whether this would actually happen before we tackle whether a non-disabled minor, non-terminal, but in extreme pain, would receive the right to a physician-assisted suicide.

Actually, no need to tackle it. I guarantee that it wouldn't happen.

Nancy Fitzmaurice was not terminally ill, and assisted suicide cannot replace pain management in disabled people because some non-disabled people think, "I could never tolerate such low quality of life, therefore this person must not be able to either."

This is all about assumptions and what happens when you throw legal clout behind them.

Nancy Fitzmaurice and Assumptions

When I woke up after brain surgery, I was still intubated. I wasn't expecting this, and I initially wasn't expecting the tube to stay in for long. However, the doctors were keeping it in for a reason: They thought that there might need to be more surgery. No one presumed in that (non-emergency) situation, however, that it was okay to go ahead with it without:

1) Ensuring that I knew what was going on

2) Getting my consent

We figured out how communicate through me blinking my eyes, and I let them know that I understood the potential need for more surgery and consented to it.

If someone *ever* makes assumptions about what I must want for my healthcare, based on the fact that I'm disabled, they will rue the day, and I'm not worried about a doctor trying to talk my family into anything if I can't speak for myself - my father and sister get it.

I just wish that every disabled person was so lucky, because Nancy Fitzmaurice's parents would like to see what they've done made legal without having to go court. They'd actually like doctors to be able to make these decisions, to spare the parents. (Read more here)

I know that there are people out there who would accuse me of having no empathy for the parents. I actually do. I have children in my life that I love to pieces, including a 3-year-old niece. If I had to watch her in extreme pain, day after day after day, not being able to do anything about it..well, here's what I wrote about Robert and Tracey Latimer, in my post about Kelli Stapleton:

"Even at that age (15) I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it...not even give her pain medication, because it didn't work. And to know that her body was just going to keep breaking down, requiring surgery after surgery, until keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?"

But Robert Latimer (and Kelli Stapleton) went to prison. Nancy Fitzmaurice's parents were legally permitted to do what Robert Latimer did to his daughter.

In order to understand why the legal assisted suicide of Nancy Fitzmaurice is so upsetting for disabled people, their loved ones, and advocates, I think that people need to understand that even though these kinds of decisions haven't been legally made until August, they get made already. Babies with Down Syndrome are sometimes denied life-saving surgery because of concerns over their potential to have a good quality of life. A man with Down Syndrome (in the UK, no less) was issued a DNR during hospitalization for pneumonia that neither he nor his family knew about. I've blogged about two disabled people in the US, one of them a 3-year-old, where disability and was cited as a factor for why they were denied organ transplants (Amelia Rivera, the 3-year-old, did receive one eventually, but only after a battle with the Children's Hospital of Philadelphia). The ASAN position statement talks about the University of Wisconsin Hospital’s "practice of counseling parents to withhold care from children with disabilities for treatable but life-threatening medical conditions", including a young man with treatable pneumonia, who died after his feeding tube was removed - because people decided that he had no quality of life.

These are arbitrary, subjective, ableist decisions based on assumptions about what defines quality of life (and who does and doesn't possess it/might ever posses it), with deadly results. And now the power for others to make these life-and-death decisions for disabled people is supported by a legal precedent. The judge has opened an enormous can of worms.

And it's not able-bodied people that are going to die because of it. It's us. That's why this is scary, and people need to understand that.

Nancy Fitzmaurice: The Bottom Line

I hate as much as anyone else that Nancy Fitzmaurice was in such pain, and that her parents had to watch it. But my heart also goes out to the 12-year-girl who loved listening to Michael Buble and who laughed when her mother slurped her tea.

This quote from Nancy Fitzmaurice's mother really struck me: "I wanted beautiful memories of Nancy, not soul-crushing ones." I've said before about stories like this that the children pay for what the parents want. I've got no doubt that Nancy's parents loved her. But if I was to make an assumption about her, it would be that she wouldn't want to be remembered as the little girl whose death gave hope to parents who think that it should be legal to kill a disabled child, even if their intentions were simply to end their loved one's pain.

If we're going to make assumptions about Nancy Fitzmaurice, I wish that the court had gone with that one.

Thursday, 23 October 2014

I'd known her name for a while, but I felt moved to write to her personally after I read her essay about how the brain injury community doesn't seem interested in crip culture, in the "Criptiques" anthology. I wanted to wave my hand around and say "I am! I'm interested and I have a brain injury!"So I emailed her.

(My brain injury didn't come from the trauma that we normally associate with brain injury, but there *was* someone rooting around in my head for fourteen hours, and my brain did react by bleeding into some places where blood really doesn't belong, so yeah...)

I thought that she'd get what I was saying. And she did. We've had some great conversations - she really *gets* this stuff. She not only makes me feel like I'm on the right track with what I'm writing, but also gets me to see things in ways that I hadn't even considered. When she interviewed me for her podcast, I felt like I was talking to an old friend.

I wrote to process becoming disabled, and later to start advocating for myself and other disabled people. Cheryl writes as well, but she also makes films. She's got a new film in the works right now called "Who Am I To Stop It". I'm going to let her tell you about it in her own words!

Oh, by the way...on November 14, I'm going to be a guest host on another podcast with another disability advocate for whom I have a great deal of respect. I'll be a Guest Host on Disability.TV with Andrew Pulrang, and we'll be discussing disability in "The Big Bang Theory" (one of my favourite shows!) Visit Andrew's blog to get details on his podcast and the other television shows that he'll be discussing.

Now...

Cheryl Green Talks About "Who Am I To Stop It"

My story has a lot in common with Sarah’s. I grew up non-disabled. Years ago, I got involved in a disability storytelling project through VSA Texas. Although I was an Intern and Assistant, I became genuine friends with several people in the group. It was then that I realized the extent of segregation I’ve always seen in my community but never stopped to recognize.

How was it that I, in my late 20s then, had never had more than one or two friends with disabilities?

I had grown up with the idea that people in Special Education are “those people,” and the rest of us are regular. I had bought it hook, line, and sinker and done nothing to counter it. I didn’t see disability as a cultural group, an identity, or set of life experiences to be valued.

When the storytellers at VSA Texas took the stage and shared their stories, I had the pleasure of realizing that the sense of divide I finally could name was manufactured, and I wasn’t interested in silently condoning that divide anymore.

I stayed involved in disability art and moved from Assistant backstage to performer in mixed abilities settings. Along with ongoing friendships, I decided to go into a disability service career. When I made the decision, I still did not recognize the depth of stigma and devaluation of culture that happened in the service field. Although I now had several good friends who were disabled, I had not fully learned the depth of discrimination and oppression they faced constantly. Then, the learning came to me.

In 2010, years of accumulating mild traumatic brain injuries had finally caught up to me. I had always bounced back from them. Eventually. Changed, but good enough. Not anymore. The 2010 incident was worse than any I’d experienced in the prior 25 years of being a clumsy athlete. Life, career, even standing up straight all went on hold. I was thrust into a surreal world of fouled up cognitive and sensory processing that was nearly impossible to explain to someone who hadn’t been there. I quickly began to unfold the many layers of disability experience that include impairment and discrimination.

So I made a film that showed people how confusing my life had become. Then, I made another. Though still changed, I began to feel like myself. Or rather, I felt like I had a decent self. I asked myself whether other people who experienced disability from traumatic brain injuries (of any severity) might also turn to art to feel like they have a grounded sense of self. Turns out, there are a lot of people who do. A lot.

In September, 2014, I completed a feature-length documentary on three artists with brain injuries in the U.S. Pacific Northwest called “Who Am I To Stop It.” We are running a Kickstarter campaign online through October 31st to raise the funds for editing, color correction, sound sweetening, and developing disability access through Captions and Audio Description.

This film takes a very unique approach to brain injury documentary in that there are no stories of how people got their injuries, no medical professionals describing how the brain works, and no extended interviews. We took our film inspiration from the highly artistic, compassionate documentary “Marwencol,” with a primary difference being that one of the directors (me) has experienced disability from brain injury.

Tuesday, 21 October 2014

October is Talk About Your Medications Month, and I've been thinking about medications...and being one-handed...and a bunch of stuff...

I took an anti-depressant on and-off through my pre-stroke life, but nothing else consistently or long-term. Now I feel like I keep a pharmacy in the house - I take two anti-seizure medications, morning and night, an anti-depressant at night, and Ritalin in the morning (plus vitamins, etc.) Sometimes my pharmacy remembers to put my meds in bottles that I can open easily, but more often they're in bottles with child-proof tops.

I tried to find a YouTube video of some actually opening a child-proof pill bottle with one hand. I could only find one, and the person in it actually looks like they do it differently than I do. I grasp the bottle so it's firmly in my hand, but so that my fingers are at the top to twist it, use my thumb and fingers the push the cap (and the bottle) down hard on a surface (I usually use my leg, but you could use a table) and then, still pushing down, turn the cap to open the bottle.

It's easier to show you this, of course. The next time I have a visitor, I'll get them to film me doing it, because after 14 years of doing this, it's difficult to even explain how to do it.

Long Live the Blister Pack!

There are (arguably) easier ways to handle this, of course. You've likely seen Blister Packs, the cards with the ampules into which medicine is already poured, ready for you to punch out and take at the appropriate time. These are actually great, because they can allow people who otherwise might have trouble pouring their own meds to take them independently. An intellectually disabled person who might have had to live in group home or have had a staff person come in to a place where they otherwise live independently to administer medications each day can know by pictures on the card (like a sun, a moon, or a bed) which ampule to punch out when, and have that control.

Why don't I use a Blister Pack? It's never been recommended, and I've never felt the burning desire to ask, I guess. But I should remember to ask for meds in non-child-proof containers, because sometimes I get lazy and don't put them on properly, and I have a cat that likes to knock pill bottles off counters when she wants attention. Neither of my cats have any interest in the contents of said pill bottles, luckily.

The other advantage of a Blister Pack is that you just have to look at to it know whether or not you've taken your meds. That sounds funny, because you'd think that you'd know...but these things get to be automatic, and when you live on your own and there's no one around to confirm whether you did or not when you can't remember because you've been on auto-pilot, it's nice to know.

Random Stuff

Sometimes doctors ask whether my meds make me sleepy, because the anti-seizure meds tend to do that, and the dose for one of them is quite high. I can't answer that anymore. I've always been sleepy, and I've forgotten whether it was different before the pills. Some days it feels like the past fourteen years have been a lifetime, and that I've forgotten what it was like before.

When I first started working, sometimes I'd get doing something and forget to take my morning meds (which is okay for me to do every now and then, but definitely not a good habit to get into!) Now I set an alarm on my cell phone to remind me when I need to take them, because I'm kind of disorganized!

What are some tricks that you use to manage your medications? What about medication management is challenging for you?

Monday, 13 October 2014

For those that don't know, Kelli Stapleton was just sentenced 10 - 22 years in prison on October 8 for attempting to murder her daughter, Issy, then 14, who is autistic. Kelly took Issy to an isolated area, drugged her, shut herself up in a van with Issy and two lit charcoal grills, told her daughter that she loved her, and quietly waited for the both of them to fall asleep together. Luckily, someone discovered them and took them to a hospital before it was too late. Issy was in a coma for three weeks and has suffered some brain damage. Kelly pleaded guilty at trial to first degree child abuse, and advocates feared that she'd receive a more lenient sentence than she would for attempted murder on a non-disabled child. However, her sentence is commensurate with one for that crime.

I've tried to write this blog post many times already and can't seem to get it right, so I'm going to try to make this as simple as possible.

There's a long, long list of disabled people who were murdered by their parents. The list to which I just linked begins with Canadian Tracy Latimer, who was 12 years when she was murdered by her father, Robert Latimer. I was fifteen, just three years older than Tracy, and just starting volunteer work with disabled people when Tracy Latimer's death hit the news. I was just starting to develop a different lens through which to see her death than the 73% of Canadians in 1999 who thought that his action was taken out of compassion, and the 41% who believed in mercy killing (Ipsos 1999 ). I always thought that he should go to prison.

I vacillated as to how long as the case developed. Even at that age I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it...not even give her pain medication, because it didn't work. And to know that her body was just going to keep breaking down, requiring surgery after surgery, until keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?

I don't know when I turned the corner on it, but now I say that he should have served the same amount of time that he would have if he'd murdered a non-disabled child, as Autistic Self-Advocacy Network's Ari Ne'eman argued at Kelli Stapleton's sentencing hearing. A disabled child's life is a life, and there's already a perception out there that disabled people are disposable that doesn't need further encouragement.

Besides, I think Robert Latimer's desire not to see his daughter in pain was also at least in part about him no longer having to watch his daughter in pain...and it's not fair that she ultimately paid the price for that.

Because of a technicality with his first trial, it was 8 years before Latimer even went to prison for second-degree murder. He was out in 9 years.

But back to Issy and Kelli Stapleton.

Issy and Kelli Stapleton - Two Important Discussions

As I said, most Canadians supported Robert Latimer's actions, and Kelli Stapleton definitely has her supporters too - particularly on social media, and on the blog that she wrote. This isn't unusual when a parent kills a disabled child, especially since the media tends to paint the parent in a sympathetic light and to play up the difficulties involved in parenting the disabled child. The Dr. Phil Show in particular drew a great deal of criticism for this after interviewing Kelli Stapleton from prison.

I watched Dr. Phil's two-part show about Kelli Stapleton's actions - twice - and I think that part of the problem was that there two important discussions that arise from stories like this, and one really got almost totally ignored - by the Dr. Phil Show and in general by the media.

There's a complicated discussion about lack or scarcity or resources that meet the needs unique needs of disabled children and their families. Kelli Stapleton said that she couldn't get any help. I've heard this before in stories where a parent murders a child. I also read her blog - it does seem like she was receiving some supports.

Were they not meeting Issy's needs? The family's needs? Would something have worked more effectively? What?

We're discovering in Canada that slotting people into inflexible supports and saying "This is how it is - adapt to us" doesn't produce the best outcomes. It's led to provinces adopting individualized funding, where people receive funding to purchase their own supports from a variety of providers - the improved flexibility lets families create a support system that meets their needs more effectively and produces better outcomes for everyone involved. Because a great support is useless if it's only offered at a time that the family is unable to access it, or if a family must accept a whole package of services that won't work for them just to access one that might. Everyone has different needs.

Maybe this is what was going on with the Stapletons, maybe not, but it's worth thinking about in general. Perhaps, as some have suggested, Kelli Stapleton is just a person who wasn't interested in effectively using what was being offered to her. I don't know. But I'm hoping that the people offering supports to the Stapletons at the time of the attempted murder thoroughly went over what everyone was doing with the family at the time, because a few things that came up during the Dr. Phil interview that made me think, "That needs to be looked into. Someone dropped the ball there."

And then there's a second discussion, the one that the media in general hasn't been having about Issy and Kelli Stapleton. doesn't have. It's arguably the more vital of the two, and the fact that the media doesn't have it is a huge problem.

Few in the mainstream media say that it's simply wrong to murder disabled people.

Lack of services is not an excuse.

Difficult behaviour is not an excuse.

Sparing a person pain is not an excuse.

Parents convincing themselves that the disabled child would be better off in Heaven is not an excuse.

There is no excuse.

Plenty of people in the disability community have said this since Kelli Stapleton tried to murder Issy, especially since the Dr. Phil interview. Dr. Phil tried to say it, I think. He was clear with Kelli Stapleton that he found her actions unacceptable, but the message was lost. It didn't make it through to the people who are used to the very direct, "What were you thinking??" approach that he takes with other parents of children in crisis. He went extremely easy on her. There were many questions that I wanted answered that weren't asked, and and the social media response showed that people came away with a sympathetic view of her.

The media needs to tell people that there's no excuse for that, either. It's victim blaming, and it doesn't happen when parents murder non-disabled children. This should not be a society where, when a child is murdered, the murderer gets our sympathy.

Justice for Issy Stapleton

For justice's sake, let's take it down to the bottom line and leave autism out of it: Kelli Stapleton tried to murder her daughter, Issy, and got the usual sentence of 10 - 22 years in prison. That's the justice that Issy Stapleton deserves, and that's what all of us who have been standing behind her were hoping for.

I think that this is the closest that I'm going to get to what I want to say. The awesome blog that I mentioned in the first line was written by Beth Ryan at Love Explosions.

Here's some more great writing about Kelli Stapleton and her daughter Issy Stapleton:

Thursday, 2 October 2014

Accessibility Advocate in My Own Town

I find it difficult to do accessibility advocacy in my own town.

I do it. Every now and then, I'll approach a store owner over an accessibility issue. Depending on how they respond (not necessarily on what they do about the request, but that definitely helps), and whether the service is available from another store in the community, I might decide to shop more there...or less...or not at all...it depends on whether I felt brushed off or taken seriously. I once cornered a municipal politician in the post office and expressed a concern about accessibility in the town.

My town is much more accessible than it was than when I moved back here after my stroke, but there are still quite a few issues that need addressing, and the Ontario Government is going to require that they be addressed. There's a plan in place that requires public places, businesses and non-profit buildings to meet certain standards of accessibility by certain dates. By 2025, most buildings and public spaces will be required to be fully accessible. Municipalities and the businesses in them need to be planning for this. A new standard is coming into effect on January 1, 2015.

I didn't talk about this the other night at my municipality's all-candidates meeting, but I did ask what the candidates for Reeve and Deputy Reeve intend to do to make my community more welcoming to disabled people.

Election Season

It is that time again. We're coming up to a Municipal Election in Ontario. I really wanted to be at all of the All-Candidates meeting for my municipality last night, but I had to work. However, I'm working not far from where the meeting was being held, and I got in just under the wire to ask my question.

I'm not new to public speaking or advocacy, but this one was difficult, and I'm not really sure why. It took a lot out of me, to stand up in a room packed with my neighbours, my former teachers, agency people that I'd not talked to for years, people that my family had gone to church with, people that had known me for most of life, and say, "I'm disabled and I need you to take me seriously." I remember, after first encountering people from my community when I was in my wheelchair, I vowed to be seen in my wheelchair in town as little as possible. I'd seen the pity in their eyes and I'd hated it.

I didn't want their pity the other night, either, but I wasn't going to run from it this time. As to whether I was taken seriously - I pretty much got the answers that I expected, which is that making the town more accessible is a process and that it costs money and takes time. One candidate was able to identify some specific things that she'd like to see done. Another said that Council would "have to talk to you" (presumably disabled people) to find out what was needed.

Yes. You will. The answers that the Council candidates gave to a gentleman in line just ahead of me prove that.

If You Haven't Been There, You Probably Haven't Thought About It

He was concerned that in order to walk to our community hospital and medical centre, people have to walk along the highway, which is unsafe. It is. I've made this walk myself. He wanted to ask the people running for Council what they were going to do about it, and very few could answer the question.

They'd never walked to the medical centre or hospital from town, so they weren't aware it was an issue.

I don't know if any of the people running last night read this blog, but this is what accessibility issues are like. Unless you've had to deal with the issue yourself (whether because you're disabled or someone in your life is), you're not likely to be aware of what the issues are. For example, a ramp to get into a public building is wonderful, but having to get across grass to get to it is an accessibility issue. But it's difficult to know that unless you've had to push yourself around in a manual wheelchair.

Or unless you ask someone who's had to do it.

So if you want to know how to best make the town accessible for disabled people, ask us what we need. We're the experts on our own experience, and we're not going to steer you wrong - after all, we just want to be a part of the community too.

Let's finish with a story about accessibility, for the candidates all over Ontario who are being asked about it. Because I think there's a tendency (and it's not wrong, of course) to have the mind jump automatically to costly ramps and modifications to buildings when we hear the word "accessibility". But, as so many who read this blog know, accessibility so much bigger - and often so much simpler.

Accessibility and Customer Service

There are a couple of grocery stores in my town, but I like one, the Foodland, in particular. It's within walking distance, first of all. But for other reasons, too.

I manage food shopping pretty well, but something invariably comes up that's difficult to do when you've got one hand to work with and your balance is a little off. Something is too heavy to get off the shelf and into the cart. Something is too high on the shelf. The damn produce bag won't slide open - I could barely get those bags open when I had two hands to work with!

One day, I was walking around with a cart (instead of trying to cram everything into a basket and then carry my cane under my arm, because why do anything the easy way?), and a young employee stopped beside me. He looked like he was in high school. He looked at my cane, then at me, and said, very pleasantly, "Ma'am, do you need any help?"

On that particular day, I didn't. But I've had days when getting around has felt so overwhelming that a simple offer like that probably would have almost reduced me to tears of gratitude. Even on my bad days, I'm not very good at asking for help, even though the staff at Foodland are always very friendly and I know that I could ask any one of them for help if I needed it.

The easiest way to make your store accessible is to keep your staff accessible. At Chapters I have to fight off the floor staff, but at least I know that support is never far away. Stores that have cashiers ask "Did you find everything that you need?" at check-out give people an opportunity to get assistance without even disclosing an invisible disability, if they prefer, and non-disabled people will talk about the good customer service.

Accessible spaces benefit everyone. So do customer service practices that increase accessibility, and they don't cost a thing.